Adrenal insufficiency, and many other problems. Looking for hope.

22 years old.

I was a healthy girl to a girl with a ton of scary unexplained problems. I started to notice changes a few years ago, and have been getting worse. It started with my skin changes, and how dark it would get within a few hours after taking adderall. It really bothered me because it wasn't a normal tan. It was dark brown and muddy/ bronze. I would get super yellow/orange on top the tan. It was like a perfect stain on my fingers, and knuckles. Then my feet started to become like that and my entire body was tan. I don't go tanning, or outside. I stayed inside and kept getting darker. The "tan" never faded. I started to be self conscious, and stopped going out with friends. I stopped going out in public, and just stayed in my room. I even get a little nervous to leave my room because of how other ppl in the house would notice how I'm super dark, ugly, and look like I'm about to die, etc. Friends and other ppl even say i look different, darker, and ill. Yes, i've been told all of those things, that makes it harder for me and depressed. I don't really have a supportive family with my changes because they don't know what i'm going through. I'm the type of person that is always happy, jolly, and friendly,
so no one knows what im really going through. Behind closed doors I cry all the time. I don't like talking about it to my friends bc i just cant even talk about it without crying. Just thinking about telling the people in my life this makes me cry.

So thats the first change I noticed, now on to all of the other problems!

I am a mother, my son is 2 years old. I love him more than anything and it kills me to not be the mother i want to be to him. I'm always really fatigued, and weak. I remember picking him up and was walking, then came to a complete stop. My entire body froze and was stuck! I cant explain it because my body wouldnt let me take another step. My legs were so weak i was about to fall with my son in my arms. It's hard for me to carry him up and down the stairs bc my balance is off and my legs are weak. I would stand up and stumble over nothing.

My body changes.
My wrist, and hand started to hurt really bad. The pain is what made me examine my hand. slowly started to notice how my hand looked different and how i had to change the way i do things. The tip of my fingers would hurt really bad that i would have to use my middle finger to type. i couldn't feel my nerves on the tip of my fingers, i couldn't pinch things or grab things as well. Dropping a lot of things, and things slipping out of my hand. My finger would get super stiff when im active and i would actually have to stop to try to make my finger straight again to use. My fingers, and hands started to look long, and my wrist looked weird. I also have a ganglion cyst on my right hand. The bones on my wrist are just different and weird. My knuckles are bigger. My feet started changing with the same problems. My feet is wider and dark patches on boney parts. My toes were getting a lot longer. My arch is really bad. I just don't know why this is all happening. I would get sharp pains in my knee when im just sitting or driving. Its really scary to me bc the pain wont go away when im driving and i just have to wait to get to a complete stop so i can try to rub it. My toe nails would seem like they werent growing bc i would paint them and cut them, and months later the nail would never get longer, but the nail polish on them is shorter but not chipped. I can barely get underneath the nail, theres just skin around it like i cut it too short, but i didnt.

After all the changes i noticed in my wrist, hands, and feet.. I started noticing my head changes and face.

I have thousands of pictures of my body. Its so crazy to me to see how different and fast things are changing. I have extreme pressure around my head and face. I would always touch my ear, jaw, nose, and forehead. It just kept shifting. I know it sounds crazy but really it was. my nose was slanted towards one side of the face along with my mouth. My jaw would get wide, my eyes started to get crossed eye along with it being super blurry. I have 20/20 vision and at times it would randomly get so blurry i couldnt read, but i can still see things. The words would just get blurry after looking at it for a few seconds that i had to look at something else and get back to it. (Adjusting them) I have these grey blue dots on the corner of my eye, each eye looked different. One pupil would be bigger/darker and cloudy. It's Scary bc its so dark, and my eyes are read with jaundice. They go back/better slowly after a few weeks. My teeth got super cricket and shifted. I had a straight and perfect alignment but now it is completely off. I have a bad over bite now. My mouth is so narrow. I have trouble breathing, swallowing, that i feel like im going to die. I gag when i stand up or bend over. I gag for no reason and it really is hurtful bc the pain goes down to my stomach. I've gone to the emergency room a few times, and the immediate care. I've been to a ton of different doctors. They just weren't really interested about my problems. So i started to do research myself for two years! After all of the doctors that couldnt help, i decided to go with what i really think my problems were.

I learned about Adrenal fatigue, and had all the symptoms for some adrenal diseases and went to an endocrinologist. The first thing i said was "I think i have Addisons disease" He laughed and asked me why would i think that. I told him that i use to take adderall and it seems like my symptoms were getting worse, and that its working my adrenal glands, which leads to adrenal fatigue. I told him i wanted an ACTH test. He agreed but really didnt think i had an adrenal problem. After the test, they called and told me that my ACTH was low, but my cortisol levels were normal?..... I wanted another ACTH test done again bc i got it done at 2pm when its best to do it early in the morning. I really want an ACTH stimulation test to see if i have addisons disease but they just stopped caring.
He told me i have adrenal insufficiency and put me on corticosteriods. I said ok and took it for a month, and it didnt seem to help so stopped, bc i didnt want my body to depend on it until i find out whats really wrong.

I dont understand why he didnt want to take anymore tests after that one ACTH. Wouldnt you try to see the reason as to what is the reason for adrenal insuffiency and how i have all the signs for addisons?...I stopped going to him, and started looking for a different endocrinologist. Not that many endocrinologists know about Adrenal problems, and how to recognize them. Its rare to have Addisons disease or any adrenal disease/disorders. I've called Adrenal glands disorders places in the US. They didn't know too much about addisons disease. So my husband called an adrenal chairman i think, and got numbers of doctors that are interested in adrenal problems.

Waiting for my appointment which is in a month... so trying to stay hopeful.

I also want to go see a neurologist bc i feel pressure on my brain that makes me very forgetful, and sometimes feel like im retarded. I cant pronounce words when im talking, and slurred speech. It's depressing because my entire life i was a good speaker, and can pronouce words very clear to stuttering and not being able to even read it.

I can talk about more details about my problems, but i'll stop now since this is extremely long.

Feel free to ask questions or just vent because it would just feel really good to know someone cares, or knows how i feel. Its an every day struggle.
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